So far this week Benjamin has had visits from his physio, the community nurse to change his gastrostomy button, the disability social worker, and the visiting teacher for the visually impaired. I’ve taken him to the Sick Kids for a respiratory consultation, the GP for a flu vaccination, into Edinburgh for an early years sensory class and, for a bit of light relief, to Rhyme-time at the library. He’s been referred for an orthotic assessment, a tonsillectomy and adenoidectomy, and a possible nasopharyngeal tube placement. On his behalf I’ve made phone calls to the GP, neurology, to the doctor at the children’s hospice, and multiple calls to wheelchair services to chase up his overdue buggy.
On top of that (and the usual laundry, cooking, laundry, shopping, laundry, collecting prescriptions, changing nappies, laundry, feeding, laundry, laundry, etc…) I’ve enrolled Jackie for primary school, completed two freelance writing jobs, done a few hours admin for my ‘real’ job, made numerous cups of tea for the men who are demolishing (and hopefully rebuilding) our kitchen, and had a visit from my sister-in-law’s mother-in-law who happened to be passing.
A fairly typical week, and it’s not even Friday yet.
According to our social work assessment, I am “at risk of burnout.” I don’t buy that, I feel good when I’m busy busy busy). But is this the best way to bring up my children? The people I’m supposed to be nurturing? Constantly rushing from appointment to appointment? Jackie is incredibly patient, scoots her balance-bike to and from appointments, navigates her own way around YouTube during home visits, and looks forward to her afternoons at nursery for some proper fun. And Benjamin? To be truthful he was happiest snuggled up in my sister-in-law’s mother-in-law’s arms for a sleepy cuddle, safe from all the hassle for half an hour….